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One Giant Leap/Leaving Broken Hearts Behind

Every time Jani is released from UCLA, within a day or two my cell phone rings. I recognize the number immediately. Unlike bill collectors, particularly credit card companies, who have a system which can route calls through a number of calling centers so that the same number doesn’t always show up on your caller ID, insurance companies, having no need to conceal their identity, always show up as the same number. This number, which has a San Diego area code, belongs to Blue Shield’s mental health discharge line.

 

The irony is that Blue Shield never calls before the crisis that precedes a hospitalization. But once your child is out, they won’t stop calling until they get a hold of me.

 

The reason they call, of course, following Jani’s release is to protect their investment. They have just invested yet again a sizable sum during Jani’s hospitalization and they want to make sure I am taking care of that investment. Ostensibly, the care advocate calls to make sure that I have scheduled appointments for Jani with her outpatient psychiatrist and therapist (yes). Blue Shield knows this, of course. By this time, two years into our relationship and for them approximately $150,000 dollars in inpatient hospital bills (which would be closer to one million if not for the “contract rate” that limits what UCLA can be compensated for) later, they are well aware that there is no need to chase us up on Jani’s “aftercare.” They are well aware that we are not simply going to forget to follow up with Jani’s psychiatrist and therapist. Their purpose in verifying this is not a nefarious one. They are trying to prevent another hospitalization (and having to spend more money) by making sure that Jani has a support system in place to keep her out of the hospital.

 

I don’t know whether outpatient psychiatric visits, medications, and therapy sessions are usually enough for most to stay stable enough to avoid needing acute hospitalizations. In adults, maybe, although I doubt it. With kids, whose psychosis is far less predictable than in adults, definitely not. Over the long term, insurance companies would save themselves a lot of money if they would consent to pay for longer term hospitalizations that allowed for intensive inpatient observation and treatment. Instead, the “turn and burn” philosophy, as I have nicknamed it, where at the first sign of stabilization the patient is shown the door, means that the stabilization is often so tenuous that it barely survives a few hours in the real world. So the insurance companies answer to this is to raise the threshold for inpatient admission as high as they can, beyond an episode of violence or even a potential risk to the patient’s safety, to make it that much harder to get back in.

 

Every time Jani has gone back to UCLA, regardless of what state she is in, the doctors have had to fight with Blue Shield just to justify her inpatient admission. Hospital doctors spend half their working hours on the phone to the insurance company. Explain it to the parents? Forget it! No time. We have to explain to the folks paying the bills. The only way in America to truly control your own health care is if you are wealthy enough to pay out of pocket. Like everything else in life, if somebody else is paying the bills, they own you (or so they think).

 

I don’t think we have gotten that far away from slavery after all. It’s just that instead of a whip, they hold your life (or your child’s life) in their hands through their control of the purse strings.

 

For the hospital, “turn and burn” means that beds become available faster. There is in the United States, a staggering shortage of beds available for mentally ill patients. ULCA has a combined 19 in their acute/swing units, which is actually a high number dedicated just to those under the age of 18. Still, an empty bed isn’t going to make any money, so you have to fill it with whomever has the best insurance. Since insurance companies are usually looser with the purse strings in the first three days of an acute hospitalization, UCLA, like every other hospital, knows the longer a child stays in a bed, the lower the amount of payment that the insurance company is willing to pay. By the end of a week, insurance companies want results or they will cut off payment. So back out into the world go our children. This is also why the dirty secret of inpatient psychiatric care is that hospitals such as UCLA will release mentally ill children after one week, knowing that they will most likely return, because when they do, it’s a whole new insurance claim. Rather than fight for more time from the insurance carrier, the hospital would rather release and then readmit and thereby start the clock countdown all over again, giving themselves another few days where they don’t have to justify why the child is inpatient.

 

By now, UCLA knows our insurance, so Jani getting a bed is dependent on whether the doctors think they can convince Blue Shield that she needs acute hospitalization. For the rest of you trying to get into UCLA for the first time, you will be told that there are no beds available… until they verify your insurance benefits, what those benefits will pay for, and, based on prior experience with this insurance company, how long they have to treat your child.

 

Most people won’t tell you this stuff. I will because nothing will change unless somebody drags into the light, somebody who is not beholden to anyone.

 

And that is me. I am not beholden to anyone but Jani and Susan and Bodhi. Nobody pays me, so nobody owns me.

 

So, like usual after Jani’s last discharge, I got a phone call from the care advocate at Blue Shield (who is a very nice person I have to say). Actually, in this particular case, I was returning her call.

 

“Hi________________, this Michael Schofield.”

 

“Oh, hi, Mr. Schofield! I’m so glad you called! How are you doing?”

 

The “how are you doing?” seems very innocent, and to some extent it is. It is force of habit. We say it without thinking to be polite. But in this case, it is also a loaded question. If you are working on a deadline and your boss asks you how you are doing, what do you say? Yes, your boss may be a very nice individual concerned with your psychological state, but you also know that when you get asked that question by somebody who has power over you in some way, you are also being evaluated.

 

You are being profiled, your emotional and psychological state evaluated. It is the equivalent of being asked to walk a straight line if you’ve been pulled over for suspected DUI (which I never have because I don’t drink).

 

I can’t lie, of course, and say everything is fine, and I don’t. I always tell the truth.

 

“I am fine, all things considered,” which translates to “I am functioning.”

 

A parent of a child with cancer or some other serious, chronic illness can lose it and everybody will understand. But if you are the parent of a mentally ill child, everything you say and everything you do is evaluated. That is the legacy of the behavioral model of child psychiatry. Although the biomedical model has pretty much supplanted it, it still survives in the subconscious of every mental health provider: that the environment of the child is the primary cause of any “behavioral problem.” Parents of autistic children have fought this for years and have succeeded in making autism a social acceptable illness. Mental illness is still not socially acceptable, not yet. You still don’t see supermarkets raising money to support mental health research, although at my local Albertson’s, along with the annual March of Dimes drive, they now raise money for Autism Speaks. I admire very much what Autism Speaks has been able to do. It took them nearly thirty years to do it, but they consolidated the various autism advocacy groups under a single banner and forced the medical community to eventually acknowledge autism as a real disease.

 

At one time, autistic parents were blamed for their child’s condition but that is almost gone now. Still, what Autism Speaks proves is that you can, eventually, convince the general public that anti-social behavior is not the result of environmental factors.

 

With childhood mental illness, however, this idea persists, albeit in a weakened form. Partly this is because anti-psychotics do not work nearly as well in children as they do in adults. The meds are far more effective in stabilizing adults than they are with children. Some use this as justification that illnesses like bipolar and schizophrenia simply do not exist in children, otherwise the medications would work. But for those of us who are parents or caretakers of a mentally ill child or children, we see it everyday.  The truth is that researchers don’t know why anti-psychotics are not as effective in children as they are in adults, but they do know that the symptoms don’t abruptly stop with the onset of puberty or adulthood. Moreover, they also know that eventually, meds that didn’t work when the child was seven suddenly start working at sixteen.

 

Doctors at UCLA acknowledge, thankfully, that they are very much aware that the child they see on the inpatient unit is not the same child the parent sees at home. They acknowledge that the parent lives with the child’s mental illness everyday, in the real world, while they only see tiny aspects of the mental illness when in a heavily structured and controlled (and stress-free) environment. They are aware that as soon as most kids come on the unit, they calm down pretty quickly, usually within a day or two, even without a change in medication.

 

Unfortunately, when a child’s behavior changes for the better when the child is removed from the parent, you can see how easy it is to believe that the parents are the cause of the behavior in the first place.

 

Which is why, as apologetic as they are about it, every time your mentally ill child goes inpatient, you will get interrogated. Or at least UCLA is apologetic with us because they have seen Jani for so long and have known us for so long. Other parents still get the third degree. God help you if you are single parent. That alone will be beaten to death as the cause of your child’s behavior.

 

Only problem is that millions of kids go through divorces and don’t become psychotic.

 

You can’t make somebody psychotic. You cannot make somebody see and hear and respond to something that isn’t really there.

 

Back to my phone conversation with the care advocate at Blue Shield. We dispensed with the usual “when is Jani’s next appointment with her psychiatrist and therapist” but of course she already knew that. It was in the UCLA discharge report, which they may or may not have received yet.

 

Then her tone changed, the tone one affects when you have to broach a difficult subject.

 

“Have you ever given any thought to what this is doing to your family?”

 

As soon as she said this, I instantly knew where this call was going. You see, everybody who has ever brought up placing Jani in residential, from the Department of Mental Health to UCLA to Blue Shield to the Santa Clarita Child & Family Center, does it exactly the same way. They never suggest it would be in Jani’s best interests. No. They suggest it would be in OUR best interests, that it would make OUR lives easier. I don’t know if they actually expect this pitch to work. Do they think we are so desperate that we will ship Jani off to residential just so we can have a life back again? It reminds me of the time a Army recruiter tried to recruit me by telling me how “fun” his tour in Iraq had been. Did he really expect that to work? Does that work on anyone?

 

If you want to recruit me into sending Jani out of state to residential, don’t try to sell me on how much better my life would be. I have already split my family into two apartments and sacrificed almost everything to keep Jani going. Do you really think appealing to my desire for escape is going to work?

 

Again, this is not to say that residential is a bad thing. I have many friends who do have children in residential (although much older than Jani) and they are thriving and I am always sensitive to the fact that these friends might perceive that I am attacking their decision. I am not. I am simply saying that as of yet nobody has said that sending Jani to residential at seven years old would be good for HER, only us.

 

Which makes me think that at seven years old there isn’t an argument as to why sending Jani to another state for residential care would be good for her, which is why they keep trying to sell it based on what it can do for us or Bodhi.

 

I told her that I think about what it does to my family everyday but that at the moment my family was fine.

 

“But isn’t your daughter constantly trying to attack her brother?”

 

Ah, the safety issue. If they can’t sell residential based on how it can make our lives ever so much more relaxing, they go to plan B, which is try to create fear that keeping Jani at home creates the risk of her seriously injuring or killing Bodhi.

 

Unfortunately, there is a line in the 20/20 episode where Jani tells Jay that she wants to hit Bodhi and then Jay voiceovers the fateful line “And she does, every chance she gets.”

 

I love Jay and the whole ABC team, but that was a bit of an exaggeration. Not a complete exaggeration, because at the time that that particular piece of video was shot, she was more likely to go after Bodhi. What isn’t in the video is what triggered her: Bodhi dropped her Slushy. Obviously, her chasing him down trying to hit him is an excessive reaction. But I was there. Susan was there. We stopped her and the video cuts out (for time reasons) before you see us calm her down by distracting her with something else.

 

Is Bodhi in danger from Jani. At one time yes, very much. Is he now? No. Most of the time, Jani is great with him. The care advocate asked me if Bodhi is afraid of his sister. Honestly, no, he isn’t. He still runs up to her when she comes over for dinner. But the reason Bodhi is not afraid of Jani is because WE have worked hard to prevent that. That is why we got the two apartments. We did that to minimize the risk and it has worked. The knives in Bodhi’s apartment (there are none in Jani’s) are up high. As soon as I use a knife for cooking, I immediately wash it and put it back up. Jani and Bodhi are never alone together. Either Susan or myself is always watching. When Jani is over at Bodhi’s apartment, we engage her in the process of cooking, which distracts her by keeping her busy. As soon as she starts to lose it, whoever is going to be the parent with her that night takes her back to her apartment.

We got the two apartments so Bodhi would not be in constant danger. And it has worked because every day Jani gets better and better with him. She is learning to deal with him. That does not mean we are going to let our vigilance down.

 

Then the care advocate tried the guilt trip of “Have you thought about what might happen if Jani hurts Bodhi severely or even kills him?”

 

Of course. That’s why we’ve done everything we have over the last year. Our entire lives are about keeping BOTH our children safe. But rather than compliment us on a novel solution, the care advocate keeps trying to instill fear.

 

Oh, by the way, does Blue Shield or UCLA or anyone else who encourages us to send Jani to residential ever offer a solution to get Jani the appropriate placement?

 

Of course not. Neither did the Department of Mental Health.

 

Fine. These groups are not going to help us. That’s okay. But they could at least acknowledge our novel solution. It isn’t perfect, but it has worked.

 

With brings me to the intern program. Yes, it is over. Yes, it was our primary means of support over these last several months (UCLA and DMH would always tell us we needed support but never offered any suggestions, so we went out and got our own).

 

My fear was that Jani had become so dependent on the interns that without them she would not be able to function.

 

The anger that I lashed out with in my last few blogs was driven by this fear. I had been afraid that the only thing between Jani and residential was her interns and now the interns had been taken away. The last line of defense we had against the residential option had been stripped away and now we would be left alone again.

 

I should have given Jani more credit than that. You would think that by now I would have learned to never underestimate Jani.

 

Jani hasn’t fallen apart at all. Since the end of the program, eight interns have not come for their regular shifts (some of which may still return-I am giving them time to decide), yet Jani has handled each missing intern very calmly without the slightest hint of panic she showed prior to the her last hospitalization. This is not to say that she will not ask, once, where the scheduled intern is. I don’t want her to think she is the cause of this so I tell her either the intern is sick or out of town. And Jani accepts this without issue.

 

Even more, the departure of many of the interns has given me and Jani time together alone that we haven’t had in months. And you know what? I am having a great time with her. I am teaching her how to be a vet. She will tell me that a “number” got run over and we will perform “surgery” on that number and watch over it in the imaginary ICU (a playground). Then we will go the shelter and discuss the condition of the animals. We even do therapy on the dogs and cats (Jani seems to enjoy being a kitty psychologist).

 

Today, at a park, when Jani and I were playing, she looked up and said “A little girl for me to play with!” And it was a real girl, although she was a teenager so I had to explain that to Jani, but the whole experience really made me feel hopeful. It means Jani is actively looking for girls her own age to play with.

 

One of the interns, before he left, said that we had started to use the intern program as a “crutch” and I now think there was some truth to what he said. He also said that he felt the intern program had served its purpose, which was to get Jani re-engaging and having fun with real people again. I think he was right again.

 

This is not to say that we never needed the interns. I in no way want to diminish the hard work they put in. They worked hard to engage Jani and they succeeded. I was afraid that in their absence Jani would immediately retreat back into her world, but she hasn’t.  The interns also gave us periodic breaks in the endless war against Jani’s schizophrenia and once I got past my anger, I realized that I felt more refreshed and invigorated than I have in months. In the end, a group of community college interns did what WrapAround could not: they actually helped us get on our feet.

 

So increasingly I am starting to look at the intern program’s ending not as a failure but as the natural conclusion of what was in fact a very successful program. Much more went right with the program than went wrong. I will take many positive lessons from this experience. The Glendale College intern program provided a model of what could be done. It showed that out of the box thinking could work. Was it without its faults? No, and neither were we, but the important thing is that it helped Jani, it helped us, and it showed what could be done.

 

Despite the abrupt end of the program, we have taken a step closer to the non-profit (formally the Village Project) that will assist other families with mentally ill children. We learned what we did right and what we did wrong. I don’t think the intern program as it existed will ever be entirely replaced. Apollo 8 orbited the moon, showing that we could send a manned craft around the moon and then recover it to earth, thereby paving the way for the eventual Apollo 11 landing.

 

The intern program was our Apollo 8. They showed us it could be done. They showed us that it is possible to create services for mentally children and their families from scratch.

 

They paved the way to the moon.

 

Now it is up to the rest of us to get there.

 

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9 comments on “One Giant Leap/Leaving Broken Hearts Behind

  1. I really feel for you and your familiy. I have become fascinated with your blog, and by Jani. Even though I read about in the papers, I can’t help being shocked by the state of the US health care system. For a family in your situation, with all your worries and fears, how to finance your child’s shouldn’t be one of the biggest problems, it shouldn’t be a problem at all. I am lucky enough to live in a country with a almost free health care, and hopefully some change will be seen in America as well. And also a greater awareness of mental illness in children.
    You are doing great work with your blog atleast.

    -Rebekka

  2. Goodbye to the interns and a reframe.
    [quote]One of the interns, before he left, said that we had started to use the intern program as a “crutch” and I now think there was some truth to what he said. He also said that he felt the intern program had served its purpose, which was to get Jani re-engaging and having fun with real people again. I think he was right again.[/quote]

    He is a very perceptive man, who really seems to get the whole emotional dynamic involved. And it showed with the girl in the playgrounds.

    [quote]So increasingly I am starting to look at the intern program’s ending not as a failure but as the natural conclusion of what was in fact a very successful program. Much more went right with the program than went wrong. I will take many positive lessons from this experience. The Glendale College intern program provided a model of what could be done. It showed that out of the box thinking could work. Was it without its faults? No, and neither were we, but the important thing is that it helped Jani, it helped us, and it showed what could be done.[/quote]

    It is a great reframe which you are doing right now.

    So good to see you back on your feet. 😀

  3. Way to go, Michael!
    I am so glad to hear that things are going well (relatively) for you. After reading your last post I was so concerned, and you and Jani have been in my thoughts constantly. I hope that Jani’s behavior gives you more hope to keep fighting. I know it’s probably difficult for you to be an optimist, but I think that things will get better. You have to keep trying new things, keep fighting for your daughter. The intern program has started something amazing that other colleges may be able to mimic and may be able to help other children. Sometimes it’s hard to see when things are going so badly, I know. Like you, I suffer from major depression, and I know how easy it is to slip down into that hole. I don’t have any advice to give, I just wanted to let you know how proud I am of you and Susan and Jani and Bodhi and everyone who is working hard to help her out. You are all heroes. I wish I had something more concrete to give you guys for your struggle. You’re in our thoughts. Your fight means so much to so many people. Never give up.

  4. CBT
    Dearest Mr Schofield

    I was wondering if Jani has ever had Cognitive Behavioral Therapy? I recently wrote to you in an email entitled “From Across the Pond” in which i explained that I have Paranoid Schizophrenia.

    Last year i completed two years of CBT and it has really helped me learn to get integrated back into society. It’s by no means a cure but it certainly has made things a bit easier for me.

    Your family has been in my thoughts every day since i first learned about Jani. You and your wife are nothing short of extraordinary and your dedication to both Jani and Bodhi will eventually “bear fruit”. Have faith.

    Sincerely
    Lin

    Note from Michael: Thanks for the question, Lin. Honestly I know little about CBT because, plain and simple, insurance companies in America flat out will not pay for it. If you want, you have to pay out of pocket. Just getting insurers to pay for even talk therapy is like pulling teeth: CBT, with its more intensive regimen, is something that Blue Shield or any other American insurance carrier simply will not pay for. As I have said many times before, insurance companies control health care in America, not doctors or patients.

  5. Shocked that you haven’t used CBT
    Wow. Although I’ve never personally tried to use CBT, I have been aware of the enormous impact that it has made for patients in the past decade or so.
    I don’t think I’d be exaggerating if I compared it to the modern drugs as far as coming closer to helping people than ever before.
    Naturally, I assumed that Jani was getting the best current mental health therapy available, (which would be CBT), along with the cutting edge drug therapy that you’ve been trying so far.
    And to learn that you are unable to provide CBT to help Jani learn how to distract herself from her psychosis, because insurance refuses to pay for it is incredible to me.
    Like I said, I have not tried to use it myself, so I just assumed that it would be available if I or my family needed it.
    How can insurance companies deny this therapy when almost any professional will advise it as the first thing to try?
    (besides meds)
    The only good thing about this is that in Jani’s case, this is something that you have not tried yet, so you really don’t know that it will not work.
    Even-if Jani’s illness is more biological or organic, even if that is the complete source of her problem, maybe she isn’t so powerless over it, and CBT is one tool that she deserves a chance to at least try to learn how to deal with her condition.
    Even though I am astounded that Jani hasn’t been given CBT, I am more hopeful than ever about her chances for, (and this is where you & I disagree), recovery.
    I’ve read every one of your blogs, and you have explained more than once your logic about why you refuse to see recovery as an option for Jani, and in many ways you had me won-over with your reasoning.
    CBT would allow Jani herself to stop and say, “What’s going on here?”.
    And monitor herself, and ask herself the questions that she needs to ask in order to see that the answer is to push her delusions back into her imagination where they belong.
    If she doesn’t learn to do that herself she will never have control over it.
    She needs to be trained to train her illness and if not completely recover, make it something that she can manage on her own.
    Using techniques to train one’s own mind is not much different than the techniques used to train animals you know, this is something that Jani might understand naturally since she already has some understanding of behavior modification and pets.
    Maybe using CBT for something as serious as Jani’s problems is akin to herding cats, but I’m sure if you used the right tactics it could be done.
    I wonder if there is a Summer camp that works with children using CBT?
    Even if insurance refuses to pay for it, it would be worth it to try and find someone who practices CBT with children and try to work out the financials some other way.

  6. single mother and child advocate
    I must comment about the health insurance calling. The first time my son was discharged from a mental health admission the phone calls were endless without any actual concrete help… After I spent well over an hour speaking to a nurse with a title of “case manager” I asked if my insurance would supply a home health aide. The answer was no and they never gave anything. Just took up my time. Finally I asked to speak to a supervisor and told her I never wanted any of them to ever call me again. I often say here in New York state the mental health system of care is insane in and of itself!

    Note from Michael: I understand how you feel. We turned down Wraparound, Therapeutic Behavior “Services,” and various other government “services” for the same reason: they didn’t actually provide any “services.” What they did was try to give us “skills” to raise a psychotic child, which were in reality really geared toward educating parents how to be “tougher” so their child would not end up in the state’s juvenile justice system. None of these “services” know anything about psychosis. What parents need is, like you say, a home aide. They need an extra set of hands, not judgment or “parenting skills” from people who are neither parents nor parents of mentally ill children. This is what the Jani Foundation will do: actually provide real help like home aides.

  7. CBT
    FYI, CBT is one of the most commonly covered mental health treatments in the U.S. The reason is that unlike psychodynamic psychotherapy, CBT is a fairly time-limited approach. It’s not unusual for patients to be seen for 10 – 20 sessions and then discharged, having made nice progress.

    I hope this helps.

    Note from MIchael: I am not saying that CBT has no value. I think it does, but it is not as effective for children because the onset of their illness occurs before the completion of cognitive development. CBT is also only effective if you are able to stabilize the individual on a medication.

  8. Gotta Love that Insurance
    In 2001 I was diagnosed with agoraphobia, obviously, not nearly comparative to Jani’s illness. However, there was no room for me at the hospital to get treatment unless I was suicidal. So on my third visit to the ER (me not knowing why I was feeling like I was about to pass out, feeling like everything was crashing in on me, wanting to flee, and just being terrified altogether of some unknown force), my case worker told me to tell her that if I were let go I would go home and kill myself. It was the only way the hospital and my insurance would get me any help immediately instead of waiting for four weeks to have an hour diagnostic test with a local psychologist.

    But it’s what got me help and on the path to recovery. However, I was the only person in the ward with agoraphobia and hadn’t tried to kill herself. My fellow patients were all suicidal due to varying degrees of depression and drug addiction. No one was really sure what to do with me except make sure that I left the hospital ward once a day to make sure I wasn’t locking myself away in my room.

    I’ve had a form of general anxiety disorder since I was three, it intensified as I got older. I’m blessed that now, at 35, I’ve had some very good doctors who have been able to help me. I’m functioning, learning independence, and being able to live.

    My heart, my prayers, my good wishes – everything positive I have I am sending to your family. For strength, for peace, for happiness, for help.

    Note from Michael: Wendi, it is great to hear about your success. It gives me hope.

  9. I understand…
    I have been battling mental illness for as long as I can remember. Only being diagnosed in my teen years. I guess everyone chalked it up to me being moody or a sullen child.
    What I hate the most is there are those of us who WANT help, but there’s not much out here. In my area there aren’t support groups or any avenues of education. The scariest part of having a mental illness is NOT understanding what is going on.
    My boyfriend of 3 years has started showing signs of what I believe is schizophrenia. The psychosis he is experiencing right now is horrible. We are both scared and I’m really scared that I will get “sick” from trying to keep him “healthy”.

    Note from Michael: Erica, on my “Resources” page I have a link to a private online support group for mentally ill adults that I set up. It is not very active right now (I don’t have time to moderate it) but maybe you would be interested?